A diagnosis of Down Syndrome or Trisomy 21 carries with itself the very unfair assumption of Intellectual Delay, a default assumption, often made without basis.
Join me on this podcast to see how inaccurate this assumption is for almost anyone with Down Syndrome, and what it means to give our kids a fair chance at education.
Hey, friend, thanks for making a stop at functional nutrition and learning for kids brought to you by Weiss. That is me. In today’s avatar, I’m not just mom to a child with Down syndrome and autism, but I’m a passionate advocate for equal learning opportunities for children with different communication abilities. Today we’re talking about whether it is reasonable to assume competence in a child with Down syndrome, or intellectual disability. And how do we do that?
Today, I’m really happy to have my friend, Aparna Raghu. In the seat of the interviewer, yeah, hi, thanks. My name is Aparna. And we live in Berlin, which is a little tiny little island, near Dubai. For those who don’t haven’t heard about it, I have, I’m a mom to a nine year old daughter, and a three year old boy. And my son was diagnosed with trisomy 21. After birth, we have been working with rationally since since about six months now till now it’s been mostly to do with nutrition with diet and how that can influence and affect my children’s well being.
I’m also very interested in picking her brains on the subject of learning, and how I can optimize this a make it available for both my children actually not just for my son and ensure that they have access to to be kind of education that is appropriate that is valuable for them. And that is respectful of their needs. So yes, I’m intensely looking forward to picking your brains base right away, happy to be picked. Yeah, so please get started. As you know, we’ve been talking and like we said, for the last six months, I watched your TED Talk, speech, your message all along has been one of assume competence.
Let’s get this out of the way at the beginning of the podcast. So in effect, what you’re saying is, regardless of the label, or the dive diagnosis that your child carries, regardless of whether that comes with an intellectual disability Tag, you’re saying each child can learn, we just need to know how to teach them. Is that what this boils down to?
Absolutely. So what we do know is that we don’t know much about how children learn. Yes, we probably know a decent amount about how neurotypical children learned. But even that isn’t, that isn’t very complete, as you can see from the unequal learning curves of children in any given classroom, when we don’t know how children learn. And when we’re faced with a population that has expressive issues. So we know that many children returned to normal fine motor issues. Most children with Down syndrome are fine motor issues, also with autism, and speech is a fine motor activity, vision is a fine motor activity signing is a fine motor activity, every mode of expression is a fine motor activity, then we really have very little understanding of whether the child understands or not. So that is one thing. So it’s very hard to say, Oh, your intellectual labor smart, I don’t understand these labels.
On what basis are we making. So I feel that it is our responsibility in the lack of all of this knowledge to to take, there’s only two ways you can do this, you can either assume that the child understands nothing, which is severe injustice, which we don’t do to any other population, or any neurotypical condition, at least. So the other thing we do is to assume that the child can understand. And then we keep modulating our input to see how can we reach the child best. So that is what I mean by assuming competency is not a lot of times it’s misunderstood, assuming genius, we’re not talking about that.
We’re just giving the child a fair chance at learning. Right, yeah. And do you think that before we begin this journey, do you think there are any factors that you need to address as a prerequisite which lies outside the field of learning? Perhaps because I know you’re also a Nutritional Consultant. I know you believe that nutrition plays a huge role. Is Is there anything else apart from? You know, I know, obviously, if a child isn’t healthy learning automatically gets pushed to the backburner. But what about other factors apart from? Well, that is definitely a first factor.
I just don’t mean diet in terms of what the child is eating. But if you look at the child’s bio individuality, what the what the food is doing to the child, maybe inflammation would be a better way to look at it. So just make sure that the child is comfortable in their body, because otherwise you’re just adding too many variables and it’s very difficult to isolate whether the child is truly not understanding or the child is so uncomfortable in their body, that everything that you say has or or do with a child is, you know, we’re jumping over these huge energy barriers. So, the bare minimum to be for a child to be able to learn is for the child to be comfortable, I mean, when we suppose we are struggling with the flu or a cold or a fever or something like that position to learn and a lot of children brain fog or you know, continuously in the situation.
Asians, some, and a lot of times, it’s as simple as a daily sensitivity. And sometimes it’s more than that. And you have to work with a professional to get get rid of that. Now, I don’t think it has to be one or the other, I think you do a lot of bass level work to get a child to a basic level of comfort and start teaching, I don’t think you need to wait to do that. I mean, you keep doing it, and it increases exponentially as the child is more comfortable. But you we don’t, I don’t believe in the model of getting a foundation ready and building the learning over that I think they know each other. And that could be other than other than nutrition, inflammation and anti inflammatory diet, and just making sure that your child’s digestion, the brain access functioning best.
The other thing would be movement, because you know you are, that movement can be very neurologically therapeutic. And a lot of areas of the brains to different areas, areas of the brain to work together. I’ve you know, again, and again, you will see movement therapists say this, that movement is the language of the brain movement is both how the brain can express itself and how you can give input to the brain. So I and I find the word pyramid almost lacking because when you say pyramid of nutrition, movement and assumption of competence, you’re thinking of things building on each other. But for me, they’re like intricately layered, like there’s one is not without the other, you’re teaching a child and that child doesn’t have the basic diet or, you know, inflammation in control, then we’re not getting the chance at life the child is going to be a lot of times the child is diagnosed with a cognitive impairment when all they have is, you know, a Vitara daily sensitivity or some other or any sort of growth or something like that. Similarly, you can nutrition the, you know, the world out of the child, and what is the point of for not teaching age appropriate information?
If you if you’re saying that all kids can learn Provided, of course, we address a few issues around it, we just need to know how to teach. Now, how do I do this? How do I arrive? For example, for my son or for any child? How do I arrive at the appropriate learning strategy? How do I know what works for my son? How do I know what works for some other child? And more importantly, how do I assess this, especially as you know, many children with Down Syndrome have difficulty articulating or speech? I have a nonverbal three I wrote myself. So how do I assess this especially in a non local context?
First, I would say that assessment is less important than input at a very young age. Okay, so I had hardest time assessing. And when we get stuck on assessments, we and we are all stuck on assessments, right, the whole educational system, we’re stuck, you give input, you wait for an output, and if the output is appropriate to give the next input, if the output is not appropriate, then you hold off on the input and back down and give a more basic, more fundamental input. Now, this entire model is flawed, because we know that output is not reliable. So when the child is on, when you’re still working on getting a reliable means of output, the only thing you have control over is input. So that I learned from reading Glenn dolmens books, and this is something that has stayed very deeply in my mind. And I think it is the single most fundamental building block of SIDS life. So of SIDS, academic or learning or educational life at any rate, so in that there was a while where we had nothing we had, we had no output from set, and I hadn’t heard of rpm, and etc, at the time, and the only thing we had control over was giving input. And remember learning from Glenn dolmens books that you just keep giving more complex inputs, and you don’t do too much repetition, I did fall into the trap of doing repetition a lot. And I remember that Said’s increasing boredom, and he would just turn away.
Now the problem here is that, and I’m still not answering your question fully. And I hope I’ll come back to that. But the problem with us is that when we don’t see an output, we reduce the complexity of input. So if you’re teaching, and the child isn’t responding, we’ll go back to the numbers. Absolute entire experience, the answer is teaching multiplication, the answer is not going back to teaching numbers. And why would again, this is our presumption of competence, we just have to trust that the input has gone somewhere and is being processed.
You just haven’t. That’s not working right? Like so the one line I used in my TEDx talk was that a broken display means doesn’t mean that the computer isn’t working. Similarly, what you have is a broken or a faulty display. So you move to multiplication. And for a long time, just on the basis of trust, I moved from I moved even to exponents because I could see that as soon as I moved, I could get his attention again, but moving backwards, which is what is done in every educational system in the world. It just you’re just it’s insulting. It’s torture. It’s, it’s cruel. I know. Usually this is done after months of addition, now you’re going back to numbers that there’s really no sense in that. I would say that is before you You can even assess your child, the only thing you have control over is input. So and this is where I say that education does not have to be linear.
You don’t a child doesn’t need to know their ABCs in order to be taught Space Science. Well, if you taught them the ABCs, and then you just assume that they know it, and you go and teach something else. So why do you need to know how to spell in order to learn how a rocket launches? Honestly, you don’t really need to know that. I mean, like, I could teach anybody. If you could, you could teach somebody that doesn’t know your language, our rocket launches, and they don’t know the ABCs in your language, right? When you’re both in a nonlinear context, you are building a scaffolding in the brain for more information to come in and take hold. When you go linearly and teach one or the other. Now you throw in a completely random piece of information, there’s no, there’s no scaffolding, there’s no way to take. So that this is again, in the outer teach the How smart is that we’re really stuck in the world of sines and speech. And if these two are not there, then in the augmented world, they do pecs.
Unfortunately, x, which is the picture based communication system doesn’t allow for complex output, the only thing that I have seen, there may be many, okay, and the only system that has worked for me, and for many kids that I know and I tutor is a free form low tech letterboard, which is what we use after we’ve retrained in rpm, and then we just use a free form low tech, A through Z board, where the child has full freedom to say whatever they want. But I know that a lot of children who have more motor dexterity can do augmentive communication better on the iPad. Now, having said that, into different things may work for different people. So this is where you assess every form of output available to your child, what is going to happen is that your child is going to make progress on some modes of output and then get stuck. Almost it almost happens regularly with everybody.
This is when you know that this form of output has its limitations needed, find somebody who can train you better on that, or you need to find a different form of output. So it is an excruciating process sometimes. But when you find something that works, and you will, and everybody will, there is absolutely always something that worked for everybody. It requires a lot of and I know that because I have worked with a child, my son, who has among the least fine motor control of anybody that I know, one of the very poor visual motor integration, and he’s found something that works, I’m pretty sure there’s something for everybody. There’s a lot of searching. And we live in a new world where there’s plenty of access and information about augmentative communication.
I think speech is great in children with Down syndrome, it’s hard to express now, I’m not going to generalize in many children that have what is the word is incoherent? The way the speech is in very clear, right. Right, is how are you going to give complex input a complex output through speech when your speech is unclear. And even if you can speak even if you end up speaking, how you’re going to express? If you want to launch a rocket? How are you going to say that through speech? So this is where I think that it’s even if your child is speaking, if the if the speech is not fluent and free, it’s very important to look for other means of communication. So there’s no one answer.
I am not sure if I answered your question completely yet. But that would be my two big priorities would be keep increasing complexity of input do not give up on input. At the same time, keep exploring different forms of output until you find the one thing where your child can communicate freely and share thoughts. This is not the same as saying I want cookie, I want TV. It’s like when the world looks beautiful, right? Something like that.
Yeah, absolutely. Yeah. That has to allow for complexity of thought, right complexity, and that complexity exists in a five year old as much as a 15 year old, so a five year old, whatever your neurotypical five year old has said at five, right, that is still complexity of thought for them. It is not I want cookie, so and I have seen hundreds of kids get stuck in the eye one cookie face, and that is not communication.
Right. Yeah. So that’s what I feel as well. So just just sort of like, I think I come back to this question a little bit, because I want to know, now this, this kind of understanding, and teaching in a nonlinear fashion plus trying to find ways of output that work for our kids. Now, all of this sounds well, okay, not doable, but at least it sounds within the realms of possibility in a homeschooling context, how does one extrapolate this to a schooling context? What if I want my son to have access to learning style works for him, but I also want him to have the benefits of inclusion socialization, the chance to develop new friendships.
I think that’s important. I, in my life, these have worked at different times in for my son where I have established a homeschooling concept and then try to integrate them in school and pull them out established this again and put them back in school. But how, however, there’s there’s many kids that have that that are, there are kids that are selling using a letter board, all and are fully included. And this is this is not a by any means a, an exception. So the searching has to be done by the person that’s most motivated by the search, which is the parent usually, in tuition, we have an education system doing this, but and in an ideal system, it will be the educational system doing this. And I hope that in five years time, it will be the case, every school looks for this by themselves. It is not the case right now. And to be very practical.
I think right now the onus is on whoever the the primary motivated person is for the child. And honestly, that could be the teacher. In some cases, that could be the mom, that could be the dad, that could be the grandma, I’ve seen all possible scenarios. So that person has to hunt for the for the output, and that person has to go through iterations and calibrations and find what works, and then has to work with the school to make sure that they can do it. So it’s not easy. And I don’t at this point, I I don’t visualize this happening at school for everybody, or for anybody actually, even for the people that are fully included, I’ve seen that this process has happened outside and is then integrated in school.
Okay, so the inorganic in that sense, you build it up outside, and then you try as best case to integrate it back into school sort of reverse engineer it back into school. Yes. Okay, I hope things change. From at this point for me where I live, for example, this is not even a possibility. I know that I could do something like this and reverse engineer it back in school. So and that is unfortunate. And it is it is probably not true just for you. It is true everywhere because we’re still living in a world that is still coming to grips with the idea of not just including people with disability, but the idea of disability itself.
Right. So it is I mean, like it’s, it’s we’re still moving from place of tragedy to a place of acceptance, and hopefully tomorrow to a place of just natural inclusion. There are rare school districts that actually do a very full, very open, organic inclusion, even then, the education system is not evolved enough that people would know what the right what best fit for your child is. So it can happen. But it’s hard.
Is there anything that you would take as a i, you might smack my head off for this question. But is there anything you’d say, as a general rule of thumb as far as learning for awkward systems? And of course, I’m referring here specifically to get to the diagnosis of Trisomy 21 Down syndrome. What I mean is, for example, you know, you hear over and over again, that music is great for our kids. Yes, just an example. So is there anything you take as a general?
No, no, one thing that I I mean, if I can, one, if you will allow me to come from the other end of it. The one thing that I have over and over again, is that speech is a limiting factor. And yet, a child’s speech is seen as the ability of their cognition as as, as a reflection of their cognitive ability. So I think the one thing that we know for sure, is that more kids with Down syndrome did not have a proxy, I think I saw numbers higher than 80%, I need to go back and look at these values. But there’s a huge, huge percent of kids for Down syndrome that have speech apraxia it is, it is extremely impractical to assume that speech will allow for complexity of, of communication. And you know about self limiting factors, right? If you limit if you’re limiting the complexity of communication inside, for anybody, if you don’t allow anybody to, if you take a person and say that you can never express a complex thought again in your life, I wonder what that does on the inside? Like, we’re not thinking complex thoughts.
I don’t know. I mean, like, I think I would, I think if you told me that, you know, we all have experienced with our female relatives in in the olden days, when chauvinism was up and thriving, and were very intelligent women, they didn’t just did not have the opportunities of doing an equal job as their husbands would read. And I often wonder about that. I wonder if if you’re just made to do something that’s maybe below your capability? How does your brain respond to that? At some point, you must you must want to attain an equilibrium somewhere. Yeah, yeah. Or does it return to you the other way? You either you just stop thinking or you do think but then that those thoughts just stay inside you because there’s no way to express them. Or you haven’t been given a way to express them. So this is like and I probably have said it like Like 10 times during our discussion, but I’m just thinking of these kids that are asked the same question over and over again, think of how many children with Down syndrome, you know, that are answering the same question.
Why? Because that’s the only answer we can understand. Because their speech is incoherent enough that everybody can understand only, you know, what’s your name? Or what’s your mom’s name or something like that something similar? And then we ask them the same thing, because that that’s the only thing we are capable of understanding, and which is we are applying our limitations on this child. And it is so unfair. That is exactly right. We are applying our limitations on on our kids, not the other way around.
Which again, this is a more practical question that I have, what is your opinion on learning screen time, because there are so many great apps that both I and my son enjoy, but they are on the iPad. So I would add here that this is especially true probably for your listeners outside the US because a lot of material, a lot of stuff comes from there. And sometimes you know, things like shipping etc, can be prohibitive, making an electronic option, the only viable option, so to speak. So what is your opinion on this? Do you think screentime is is maligned, do you think it should be dropped for anybody under a certain age or mix?
I don’t actually have a strong opinion on this. We know that. I mean, we know that research that screen time and focus don’t necessarily go together. Okay. They’re inversely correlated. In terms of visual focus, for example, for my son, if you have a screen in front of him, he’s able to converge his eyes better. So I think it depends on if your child is learning well, with screen time, go for it. I mean, I would I would just, there’s, there’s just still enough things bad about looking at the screen that I mean, it should probably be minimized. But if, if the choice is no education and education in front of a screen, I will choose a screen any day. Let’s get to here. Yes, there are lots of people that are completely into the you know, natural model way to look at a screen you don’t need to get a formal education. And that is true, but our children are run the risk of not getting any education at all.
I think in that sense that I would if they’re getting age appropriate education, I would, I would be fine with this. Thank you so much, Aparna, thanks for letting me vent all my feelings about about education for children window, it was great for me to hear. When do we get to consult with you? And this my last question from when do we get to consult with you as a as a, I don’t know, the word that you’re you’re going to use as a learning consultant is that is that I think already, I’m already moving, moving on to the path of being a nutritional and learning consultant. So that’s what I do. I am in my other life, I’m a tutor for neurotypical kids. And I’m also starting to tutor non speaking autistic kids.
I have a total total of four right now. So I am looking not just to tutor more needs, but to also, as you know, I’m passionate about kids with any disability, getting to learn your science and math, and not that they can’t learn other things. But it feels like these two subjects are so restricted in the way that we offer it to them. So right now, I’m ready right now to consult.
That’s fabulous.That felt good to say out loud, and I feel that I could take another three episodes to do justice to justice to justice topic. Now, if you have a child with Down syndrome, please write to email@example.com. Forward slash Dr. Weisz Sarathi. And that’s actually Dr. VA is HSARATHY. Okay, or you can write to me, you can email me advice at functional nutrition for kids.com. But see if you can get the Instagram thing going because I’m really hoping to start a conversation about this on Instagram. And let’s chat about how learning opportunities have shaped up for your child and what it means to you to assume competence. Thank you again for joining me and see you next Friday as always, and as always, I’m your host Vaishnavi Sarathy. And music today was composed and performed by my nine year old daughter my three bye.